Helpful answers to common questions
Information about participating in this study.
What is a research study?
What is informed consent?
Signing / completing the informed consent form is NOT like signing a contract; you can leave the study at any time, for any reason. You are also encouraged to ask questions at any time throughout the study.
What is the goal of this study?
Who can participate in this study?
What does this study involve?
You will also be asked to submit copies of your child’s brain scans (MRI, CT, or ultrasound) and radiology reports, which will be used solely to confirm the corpus callosum diagnosis required for study participation.
You will also be mailed a kit to contribute salivary samples for future extraction of salivary DNA. These samples will be stored by the Caltech team.
Some families enrolled in this study will be asked to participate in an additional phase of this research that includes visiting the University of Minnesota for an in-person developmental assessment. Travel expenses will be covered.
Who will see my data from this study?
How much time will it take?
At each visit, caregivers will complete questionnaires online (~2-3 hours) and will participate in phone-based interviews (~1-2 hours), which will take ~4-5 total hours per visit.
What if I miss one of the testing time-points?
What if I change my mind part way through the study?
What if I don’t qualify for this study?
Will I receive research test results?
What happens if I agree to participate, but I change my mind later?
Risk & Benefits
How will this study help people with ACC?
This understanding can be used to create more effective intervention techniques and supports for children and adults with DCC/ACC.
What are the risks of participating?
Will it cost me anything to participate?
If you are invited to the University of Minnesota for a direct behavioral assessment, all travel expenses will be paid.